The PKD Charity hold regular Patient Information Days around the United Kingdom. The most recent were in July 2017 at Birmingham; in July 2016 at Kingston, London; in 2015 at Great Ormond Street, London .

The next planned events are in December 2018 at Birmingham; in 2019 at Newcastle; in 2020 at Wolverhampton. Further details of future events will be posted here when confirmed.

To harmonise data collection across Europe and internationally the ARPKD/NPHP-RDG has established links with established European and US registries: ARegPKD Europe (director Dr. M. Liebau) and US Hepato/Renal Fibrocystic Diseases Translational Resource (director Prof L. Guay-Woodford).